Thursday, Nov 14, 2013/Friday morning

Today was a busy day.  Cody has been experiencing some possible seizure activity. So the neurology team was here bright and early.  Dr. Khakoo told us that Cody's case from the brain swelling and the HHV6 reaction during transplant will be published in a journal.  Pretty cool, I think.
So once his symptoms were described as best as he could, an MRI and EEG was ordered.
The sarcoma team came in and we were able to make the 12 appt with radiation.  It was basically a consult and she is trying VERY hard to get him in today (Friday) for his simulation.  They will make a mold for his body so everything gets targeted at the same place.  They are only beaming the primary tumor.  Interesting that she said the tumor will always be there but there hope will be that it is dead cells.  So praying that will happen today.  That would save me a trip here for that.
He got the leads put on his head and he is wearing the EEG for as long as he can.  They will take it off for the MRI.  We will see if there is any seizure activity there and then look at the brain with the MRI.  A bit nervous about this, I must say.  Hoping that is all clear.
We have enjoyed seeing all of our friends/nurses/nurse practitioners/bone marrow team drs and I think one of our nurses  is coming today from Cohen's. We met her when Cody was first diagnosed 5 years ago.   She knows nurses here and she is coming to visit.  She is the nurse at Cohen's that took me in her arms when I was so upset that Casey was not a bone marrow match and I felt our lives crumble.  She begged me to go to Sloan.  She gave me her number and as we talked I learned that her 3 year old passed away from leukemia many years ago.  I hope she makes it today.  It will be great to see her.  We have a great nurse here this round too, Sue and she keeps Cody smiling.
So here are some photos from the yesterday.  There is one of the scans and it is hard to see.  Cody actually posted it on Facebook.  The black spots are the cancer tumors in case you did not see it on facebook.
I will update later today.